ArticlePaediatrics & child health2025
Our journey, our stories: The lived experiences of parents/caregivers of children with severe neurodevelopmental disorders and behavioural complexity requiring examinations under anaesthesia.
Article in Paediatrics & child health, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Objectives: A significant proportion of children with severe neurodevelopmental disorders (NDD) are unable to access recommended medical evaluations due to behavioural complexity (aggression/self-injurious behaviours). Medical evaluations under anaesthesia (EUA) are often required for planned procedures; however, a lack of coordination results in missed opportunities and repeated, often traumatic sedations. We aim to describe the lived experiences of parents/caregivers of children with behavioural complexity undergoing EUA at a quaternary hospital in Canada. Methods: Semi-structured interviews were conducted to explore families' experiences with EUAs. Data collection included demographics/diagnoses, experiences of previous EUA, and positive/negative contributors. An inductive thematic analysis was undertaken as part of an iterative process. Patient-oriented research principles embedded within a quality improvement framework were utilized throughout multiple phases of the study. Results: Eleven families participated in the study. Five key themes were identified: (1) The cumulative physical and psychological trauma experienced by patients and families when accessing EUA, (2) Need for awareness/understanding of behavioural complexity in children with NDD, (3) Requirement of equitable and not equal care, tailored towards specific needs, (4) Communication being key, and (5) Providers being willing to undertake the role of care coordination. An infographic was developed to highlight these themes by our parent partner. Conclusions: Our results highlight potential opportunities to increase care coordination of EUA for this population. Due to resource constraints and the lack of formalized pathways, there is ample room to create processes that are patient-centred and trauma-informed. Parental/caregiver voices are essential in guiding future service development.
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